Off with her hat!!

Ok so I did it!!! For the first time, yesterday I took the hat off! In public! In my spinning class! Shit! It HAD to be done I was sweating like a sweaty thing! You would think after THREE times of losing hair I would be used to this unveiling but no, it's hard for me- fact.

And today,  I did it again, first in pump class then pilates.....so that has to be it I spose, no biggie - just me, no hair, whatever. It's so daft really I know, I don't know why I am so self conscious, I mean it's pretty darn obvious I have no / little hair and thus am cancer chick which is why I have been wearing beanies around town constantly for the last few months but still it's hard. It's crazy, I mean the other day in class, 2 of my peers had cancer support T shirts on - yet I still didn't have the guts to reveal myself as actual cancer person. I am unhealthily obsessed with shaven headed celebs in the desperate hope that their profile will reduce stigma of women like me.

I have to get used to it, and soon, I will be working in a month! As well as the cafe work I am looking into festival medic work, yay - how cool would that be!? Get to go to all the festivals this summer and hang out waiting for someone maybe going in to labour.... This has also led me on to thinking about some voluntary overseas work in midwifery.......we will see. Life maybe starting to take shape, things are good.

Peace

x

Back to life....back to reality

Day um lots since stem cell transplant......and I have to say life is starting to feel somewhat normal, whatever that means! Well hang on what does it mean?

• I have comparable energy levels to those around me
• I am starting to sleep better (without drugs)
• People aren't doing everything I ask (Doh!!)
• I am starting actual work in May (Eeeeek!)
• I have been doing weights at the gym, yoga, pilates, badminton..
• My hair is growing....at last
• I am about to turn forty! Yay!!!! I made it!!
• I am able to think about the future, because I have one!
• My port scar is healing

So, yeah it's all good :) It's been hard though, adjusting from being officially dying to a solid remission, possible cure. I have been living outside of the normal rules of life for sometime now and I am having to consciously ease my way back in.

I had a period of feeling quite down, and I was so cross because I 'should' have been ecstatically happy to be alive and yet all I felt was that I didn't belong. I still feel like I don't really fit in, I am yet to find my new place in the world, a new identity. But I have chilled out about it a lot and have come to peace with taking baby steps and for now just looking at the next few months and not stressing about what I will be doing in a year or two or however many. I am on borrowed time, I know that. It totally spins me out that I am alive, it hits me every now and then and I am like OMG I shouldn't be here, why am I here? And then, obviously, thank God I am. Strangely enough I am more scared of dying than I ever have been, I guess that's because I have been so close, like up close and personal and I know death, like an entity death is more real to me now. And also I feel like I am the proverbial cat with 9 lives, I must have used them up by now, you know - next time it's curtains! 

Despite a tangible awareness of mine and others' mortality I still find my self sweating the small stuff, or obsessing over the superficial. This disappoints me but it seems that my ideal self is still going to take a lot of work and doesn't just automatically reveal itself and take residence merely as a consequence of what I have been through.

I made a list about a year ago of what I was grateful to cancer for.......I can't find it but I remember it being quite long. I need to review my gratitude in light of the events of the last few months, what is clear is that living consciously is so important in order to stay in the moment and cherish life and love. We know what's best and healthy and nourishing for us but we have to revisit that knowledge regularly or things can slip. 

On that note I am off to rewrite my gratitude list :)

Om shanti om :)

PS

Went to London last Thursday to see the show Matilda again, it was super bloody amazing! Massive thank you to the Willow foundation for my very "special day out". The show has a very special place in my heart - I ent with my family last year to see and to go back was like closing a circle. I hope I have just managed to put a link to the song "when I grow up" on my blog, I listened to this when I was waiting for my stem cells to arrive and be infused, it resonated with how I felt and I shed some tears......love it. 

When I Grow Up - Matilda the Musical (Original Cast Recording)

Reflecting on remission

Complete remission!

It's been 2 years since I relapsed, 18 months ago I was given 6 months to live. In the last 2 years I have had 3 different courses of chemo, got into remission and slipped out of remission whilst waiting for a stem cell transplant. 

It's been just over 2 months since my stem cell transplant and the results of my PET scan show complete remission. Now this is a bit more exciting than the last remission because this latest treatment was potentially curative, whereas when I was in remission after Brentuximab last year without transplant we knew it would come back........and now there is a chance that it won't. I don't know the stats, I know from experience that there is no point sweating over stats, I am happy to be a deviant.

I am still recovering from the transplant physically, and mentally I am still recovering from the insanity of the last 2 years. It's time to start reintegrating into some kind of 'normal' life, but I am now needing to forge a new life, I can't go back to my old one. In my old life I had just got my  UK midwifery registration back and was looking for a job and making plans to work for a while and then having another adventure. I never intended to stay in the UK - I was Australia bound. 

In my new life I am not going anywhere! And that's fine, my feet don't itch for the first time in my life! I cannot see myself going back to midwifery, the hours, the stress, the whole thing. Midwifery is not something that I could do part time, I need to be really in it, full time. So, I have accepted that. It's really sad, and I do miss it terribly. I can't watch 'one born every minute' or 'call the midwife' it reminds me of what I can't do anymore.

There's no panic, I don't need to decide right now what I am going to do but it is scarey. I have been outside normal life for so long I feel incompetent and unconfident in actually functioning like an adult in the outside world. It's also exciting and liberating to have the chance to start again, I am sure I am not the first person to experience these confusing and contradictory emotions.

I feel that I need to give back, to try and balance all the kindness and love that has poured my way. I am not sure how yet, and in all honesty right now I don't feel like I have anything to give, having any kind of commitment in my day puts me in a minor panic!

Anyway, that's enough navel gazing for tonight :)

Love and Light

Sim xxxxxxx

post stem cell transplant ......recovering...

Day 63 post stem cell transplant, crikey! In some ways it's gone super fast and in other ways well...it hasn't! 

Christmas was busy and my counts were recovering uber fast, I was feeling pretty good and I was excited to be able to socialise. Looking back I over did it and it wasn't much suprise that I was admitted to hospital on New Year's Eve with an infection. That night I felt properly ill and it was quite scarey, I was vaguely aware of fireworks at midnight but I was pretty out of it really. The main concern the docs had was that it could have been an infection around my portacath, so they hit it hard with intra-venous antibiotics. In the end they concluded it was probably a virus, it felt like it was probably flu, which I haven't had before. Three weeks on and I am finally feeling fully well, but it definitely set me back so I have been very much taking it easy. Actually that's not strictly true a week ago I went to the gym with a friend and she was talking me through some squats and we did some cardio, two days later I played badminton and then basically couldn't walk for about 4 days, but apart from that I have been taking it easy, honest. 

I am still pretty bald although I do have about 2mm of baby hair, but it only covers maybe 70% of my head so it's not the real deal. It is dark though, I thought for a little while it was looking grey which I wasn't ready for at all!

I had a PET scan today, the consultant will call me in about a week with the result. If it's clear I don't have another scan unless I develop symptoms, I will have check ups every 2 months for a year, and then less and less subsequent years. If I see 5 years I am said to be cured. If the scan's not clear I will have to start bucket list take two! Anyway, it's totally clear, of course it is :)

This April I turn forty, I am so grateful! No party, no fuss- just waking up and breathing and being bloody forty is soooooo amazing.

The future is hard to see because it's so uncertain, but there are so many people in a similar situation and I know I will learn to live with uncertainty and also make plans; but at the moment that seems impossible so I will just take each day as it comes.

In other news, I have started singing lessons, oh yeah! Watch this space! I am fully going to audition for the local musical theatre group this summer! Ok, so that's an future actual plan, cool, good start !!!

Hugs :)

Mince Pie is it???

Sensitive teeth, Spanish, Mince Pies, Sofa, Blood Counts, Ann Summers, Beanies........

Buenos Noches, I am learning Spanish! I am learning it phonetically so can't write down everything I have learnt, that's my excuse. As I am still so limited with what I can do with my days, it seems a good way to spend my time. And a good excuse to go to Spain again....

Last time I wrote I was all cocky about my blood counts coming up, and then the next test they had basically rocketed and I was feeling very smarmy and bullet proof! But the next time I hit a plateau and I started to realise the seriousness and the enormity of this 'recovery' business. It's hard because there's nothing you can do, there's no overall deficiency of xyz it is purely that my bone marrow is starting from scratch. Apparently strenuous exercise can hinder your immune system but to be fair there's not much chance of  that right now.

Yesterday's counts were on the up again - I now have a neutrophil count of 1!! Oh yeah, I am only mildly neutropenic so although I still need to be careful I have a much lower risk of infection than before. So I have hugged people, seen children, gone nuts!!

I am a bit anaemic, my iron level has dropped in the last couple of weeks and my blood pressure is low so I get really dizzy when I stand up. I have been out walking for a good hour most days which is fine but I am good for nothing when I get home, apart from snuggling up on my groovey sofa :) I suppose cos of the anaemia I am super cold all the time and pretty much live in beanies. That's fine though, I often forget I have no hair and then when I am getting undressed for bed I am like whoah there! Who's that! I haven't felt like wearing any of the scarves I bought, they just feel like cancer badges and I have been there and done that. This is the 3rd time in 5 years I have been bald and I have tried the mad wigs, the realistic wigs the scarves and now I am glad it's winter and I can feel 'cancer incognito' in a nice beanie :)

My friend Sue shaved her head - she looks fabulous, it does convey a certain boldness and confidence. And I can look at her and think wow mine will be like that in about 6 weeks! She raised a load of money toward the sofa, again, people have been so kind and amazing. And seriously it has greatly enhanced my quality of life to be so comfy and snug and not have to be in bed :)

The worst left over effect I have from the treatment is sensitive teeth!! What? I have just had high dose, chemo, stem cell transplant all that! My biggest complaint is bloody sensitive teeth, hot, cold, sweet equals massive pain. Really annoying and very random.

Talking of sweet, why are mince pies so good? How I have I managed to justify them to myself after years of denial? The cream seems to offset the sweetness so not too much pain involved from the teeth. I blame the sofa, just sitting here all cosey and then thinking ooooh I know what would top this off nicely.....So far I haven't put any weight on but I am worried that I will wake up one morning and all the pies have caught up with me and I will be like a stone heavier!

Right, so the other thing I have been thinking about is the fact that I probably will have to get a job at some point next year. Now I need to start slowly and I have had a fab idea! Hosting Ann Summers parties! (tupperware for the bedroom)  How much fun would that be?!! I have never actually been to one here but went to the equivalent in NZ it was awesome fun! Toys all over the place, everyone loved it, I am sure the woman made a fortune! I will put a shout out on facebook to see how much interest there is.

Buenos Noches xxxxxx

It's all about the sofa

I can't believe I have been home 4 days! It's wonderful. I have felt so much better than I expected, although that has had it's down side I think I may have been overdoing a bit so I have reigned myself in and have spent most of today on my AMAZING MAGIC RAINBOW SOFA OF JOY!! Yes thanks to the generosity and kindness of a whole load of people I am now living the dream! My original idea was red jumbo cord, but that's only because I had no idea of the existence of the velvety multi colour vision I am now seated upon, in fact I don't think it did actually exist until a team of fairies made it for me last weekend :) So, thanks to everyone who contributed and to my tenacious little brother who was determined to make this happen. Of course I threw everything off course by being discharged Monday not Wednesday, but I can't help being a little bit magic!

I thought my neutrophils had to be 0.5 before I was discharged but the consultant on Monday decided 0.4 was ok and as I was feeling well I could just go! Wednesday they were 0.6 so I am slowly and steadily creeping up in the right direction. My iron level is 9.6 which I think is fab, especially as I don't eat meat. My platelets are low - 17 and I did have 2 platelet infusions during admission, so I had better not fall off my bike or I might bleed to death, hmmmmm I know maybe I shouldn't ride my bike. So if it wasn't for my baldy head no one would know there was anything wrong, and as its winter I can chuck a beanie on and blend right in! I am on a whole pile of meds still which brings me back to earth. But, really I think things are going smoothly.

And another bit of wow-ness is that my friend Sue decided to shave her head for my 'rehabilitation' cause. She is doing it tomorrow at her children's primary school. Yes I have tried talking her out of it but she is like a woman possessed! What a nutter! But in an amazing way! At least I will have a bald buddy beside me as it grows back! She really is going above and beyond, I mean I have no choice in having no hair, she does - now that is really brave. Hopefully I will be able to post a pic of us both soon.

Signing off now from my fave part of the sofa, the purple chaise longue bit.......mmmmmm.....purple's definitely a good healing colour :)

Love and Light

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